I need to find a fellow sufferer so that I don't feel like a freak! At times when I know I am (a) particularly stressed or (b) when my immune system seems a bit down, this is what happens: it starts with a slight tingling or discomfort on the inside of my upper or lower lip. Not painful, not itchy, just weird. This develops into serious swelling so that sometimes I look like a squirrel storing nuts for winter or a member of an obscure lip-stretching tribe. Very strong antihistamines will reduce the swelling within 4-5 hours. If left untreated, my face can sometimes stay like this for days.

A variation (more manageable because it's less visible) can be: the same type of swelling, but this time on the soft tissue pads on the tips of my fingers, or under my feet, between the ball of my foot and my heel. When this happens it is quite painful to walk or put on shoes, and this can last for a few days.

The swellings then simply disappear, leaving no trace.

Doesn't seem to be conventional urticaria or hives, because there is no itching and the skin does not get itchy-red, just swollen and a bit hot.

Anyone else as weird as me? I have had this condition for about 20 years.

Hi Alison, it sounds more like angioedema [see below]:
Individuals who develop hives may also suffer from a condition called "angioedema" where swelling occurs in the deeper part of the skin. Swelling can be severe and lead to deformity of a portion of the face, lips, around the eyes or genitalia. If swelling occurs in the throat, breathing may be affected and medical attention must be sought immediately.

i am investigating all kinds of urticaria because my daughter's boyfriend suffers from urticaria vasculitis and has multiple symptoms. don't know if this will help but i'd say after 20 years- your patience must be up!

kathryn

Quote:

Originally Posted by AlisonL

I need to find a fellow sufferer so that I don't feel like a freak! At times when I know I am (a) particularly stressed or (b) when my immune system seems a bit down, this is what happens: it starts with a slight tingling or discomfort on the inside of my upper or lower lip. Not painful, not itchy, just weird. This develops into serious swelling so that sometimes I look like a squirrel storing nuts for winter or a member of an obscure lip-stretching tribe. Very strong antihistamines will reduce the swelling within 4-5 hours. If left untreated, my face can sometimes stay like this for days.

A variation (more manageable because it's less visible) can be: the same type of swelling, but this time on the soft tissue pads on the tips of my fingers, or under my feet, between the ball of my foot and my heel. When this happens it is quite painful to walk or put on shoes, and this can last for a few days.

The swellings then simply disappear, leaving no trace.

Doesn't seem to be conventional urticaria or hives, because there is no itching and the skin does not get itchy-red, just swollen and a bit hot.

Anyone else as weird as me? I have had this condition for about 20 years.

sounds like a possible food allergy. Have you tried an elimination diet?

The only thing that concerns me here, is that severe swelling like that is usualy indicative of an anaphalactc reaction (which can be serious).

I would go and get allergy tested and find out what is setting you off.

I wish it was a food allergy - because then I could stop eating whatever it is and relax. It's not. I've gone the elimination and allergy testing route. Absolutely nothing comes up (except my face, of course). Doing my own tracking, 90% of the time the swelling happens just AFTER I have gone through a particularly stressful or anxious time. Ten per cent of the time is when my health is just a little below par, eg when I have a cold or flu.

Hi Alison, it sounds more like angioedema [see below]:
Individuals who develop hives may also suffer from a condition called "angioedema" where swelling occurs in the deeper part of the skin. Swelling can be severe and lead to deformity of a portion of the face, lips, around the eyes or genitalia. If swelling occurs in the throat, breathing may be affected and medical attention must be sought immediately.

i am investigating all kinds of urticaria because my daughter's boyfriend suffers from urticaria vasculitis and has multiple symptoms. don't know if this will help but i'd say after 20 years- your patience must be up!

kathryn

Thanks, Kathryn. I've looked at angioedema and it does seem to be close-ish to my symptoms, although I do have my doubts. Mostly my trigger is stress, I know that, but I wish I knew what exactly that state of stress was releasing into my system to cause the swelling, so that I could counter it in some way. If I could address it, as it were, BEFORE the physcal manifestation, that would be first prize. I've tried holistic as well as conventional (antihistamine) methods, but nothing works to PREVENT this happening. Antihistamine is only effective in bringing the swelling down.

One small observation that might be helpful to someone: 9 times out of 10 the swelling starts when I'm asleep, usually in the small hours of the morning (between 4 and 6am). I'm so tuned to this condition that I will wake up and feel that something is not right.

Hi there,
I can relate to what you are saying Alison. First of all, can I ask what antihistamines you do take when you have an outbreak? You mentioned you take "strong ones" and the swelling goes away in a few hours?

I am a 37 year old woman. I've had the same exact thing for probably at least 20 years too! I remember being in high school and I'd wake up one day and my eye would be swollen shut!

More recently I just get hives and then the swelling in my lip and face. I was put on a daily 10mg. dose of Zyrtec a few years back and it has lessened the number of times per year I have an outbreak but I still get one and just got one yesterday. It sort of "moved" around my lip, starting at the bottom then moving to the right side and then today my entire upper lip is now swollen. I've been taking Benedryl to no avail. I'm trying to wait it out but it is so very frustrating!

I also feel the "tingle" you mention and have often wished there were something I could take when I know it will happen to prevent it! There must be something out there! I also get them mainly at night and then wake up with it. I also have had standard hives on my body and that tight feeling in my fingers or sometimes toes as well. I have read enough about Angioedema that I am sure that is waht it is. I am fine with it at this point and would not even care so much if there were just something I could take that would make the swelling go away in an hour or two (or so!). I had a steroid shot once and even at that it almost took a whole day for the swelling to subside.

If there is anyone else out there with ideas or can offer up help that would be great! I have a doctor appt. tomorrow but I've seen many doctors and have never been able to pinpoint the cause of this.

Hi Alison! If you're a freak then I am too! I also have the hives, lip swelling, and swollen, painful knots on bottom of feet and sometimes palms. This has only started this summer. Am supposed to see Dr. Friday(allergist) and go from there.
Also, have you had painful joints with this? Not always the same joint,"moves around"?
I did get relief last week from decadron shot and dose pack but hives came back as soon as pack finished.

I just got back from seeing my doctor today. My lip swelling lasted longer then normal and was still swollen 3 days after it started. Usually it's gone in 24 hours. So I decided to see my doctor. He actually had a lot of info and suggested a very proactive treatment.
Zyretec - 10 mg. twice a day. I was previously taking only 1 per day but he said upping the dose might help especially with the swelling happening at night. I also talked with the pharmacist when I picked it up and he agreed it was a safe and effective course to take and others did it as well.
Zantac - 150 mg. twice a day. This was a surprise. It is normally an indigestion/ulcer type med. but my doctor said there has been successful research in using it to treat angioedema. I got on the internet as soon as I got home and did find this to be backed up. Here is a quote from one of the sites I found: "The sedative, doxepin, is particularly effective as an antihistamine for more recalcitrant urticaria, although there may initially be problems with sedation. Two new antihistamines, loratadine (Claritin) and terfenadine (Seldane) have shown significant benefit in patients with chronic urticaria. These non-sedating antihistamines have few side effects although there can be drug interactions with Seldane. The combination of H1 antihistamines with the special class of H2 antihistamines (medications such as Tagamet, Zantac, and Axid used to prevent acid production in the stomach) produces an antihistaminic effect greater than that produced by H1 antihistamines alone. This combination of antihistamines may be very useful with the more difficult to manage hives and swelling. Acute urticaria and angioedema will also respond to treatment with injected adrenalin, however the effectiveness of oral adrenalin-like medication for hives has been limited"

So anyway, I found other sites backing this up and it can't hurt to try it.
Finally, he gave me a 5 day course of Prednisone, 10 mg., take 2 tablets twice a day, and this is only if I have a bad flare up. Oh, and he also prescribed an Epi-pen just in case I ever have the throat swell up, although I have never had this happen ever but it made me feel better to have it just in case.

So anyway, I am going to try all of these things and see. I was only having flareups about 3 times a year after I started the Zyretec. Prior to that I'd get hives or swell up several times a month. So the Zyretec alone has proved some relief but I would eventually like to never swell up again!

I have been on Zantac for hives for a while now. I haven't seen a great deal of difference, but then again, I haven't figured out what has been causing the hives in the first place, either. The Dr who prescribed the Zantac suggested it as an H2 blocker, but another Dr I have is somewhat sceptical about how effective it is. I ahven't seen much difference, but the antihistamines and the steriods didn't do much either. Swearing, while it didn't affect the hives, made me feel much better for a little while, anyway.

genster - did you take the Zantac together with an antihistamine and if so, which one? How long did you take it and how often do you get hives? Also, do you have more of the standard type hives or angioedema?

AlisonL, I have joined the face sweller's club. My symptoms are exactly as you describe and this has been occuring for the last year. I have no idea what causes it and I can't even attribute it, necessarily, to stress or anything else. Like you, the major swelling occurs in the night 9 times out of 10. I Also get the same swelling sometimes in the pads of the hands and feet. That usually does not last very long. I have not yet tried any elimination diets or anything. If you ever solve the mystery I would like to know what you discover.

Just adding an additional point of experience to this thread... I have had chronic urticaria for 3 years now. I never had angioedema until my latest hives outbreak, which started late September. This was the first time I had angioedema. I have been lucky not to have it on my face. But it was awful on my feet. I couldn't walk for 3 days due to the pain of bearing any weight. I had some on my hands too, but it was only mildly painful there.

I am on Zyrtec and Pepcid, which seem to be controlling everything well enough. I itch and can feel symptoms simmering, but it's not too bad - I don't lose any sleep and can live life quite normally. (When my outbreak started I had not been on any meds for about 6 months becuase I thought my hives were getting better, and I thought I knew the cause and that avoidance was successful.) I hope for all of you that the meds can at least reduce the severity of your episodes.

These days the very slight angioedema I get on my hands and feet feels just like many of you have described - always tingly and hot, and sometimes itchy but sometimes not.

Lastly, I think everything official that I have ever read about urticaria has explained that angioedema and urticaria are essentially the same thing, but that tissues in different areas of the body behave differently. Some people get one or the other, but many people (like me) get both. One book that I have uses the standard phrase "hives and/or swelling" throughout when discussing causes and treatments.

I hope this helps. Hang in there everyone. I am very thankful for this board and the poeple who post. I hope others are helped just as much as I have been.

You are certainly NOT a freak! I have suffered from lip swelling intermittently for the past 5 years. None of the doctors I have been to (allergists, dermatologists) have been able to find a cause. I believe mine might be tied to stress as well. I went to Colorado for vacation last year, and when I came back and had to return to my crappy job (a LARGE source of my stress), I blew up like a porcupine. My allergist gave me prednisone, which helped (although, one shouldn't stay on steroids for an extended period--so that only helped temporarily). I also think mine is somewhat weather-related. I'm usually much better in the winter months. How about you? I'm so sorry you've had to deal with this for 20 years!

Location: A little town called Silent Hill (lol, maybe not THAT bad yet)

Posts: 30

Re: Facial swelling: urticaria?

i dont know if anyone mentioned it but what about the toothpaste your using? some people are very sensitive to the ingredients they put in toothpaste and if its only on the inside of your lips (which are constantly pressing against your teeth) then maybe brushing with baking soda or a more natural alternative would help? i dunno, youve probably already tried that but just thought i was mention it in case you havent. take care and i wish the best for all of you.

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So many other products have ingredients that interfere with skin's healing. Soaps, mouthwash, lipstick, etc. Do you use breath mints or chew gum? Sensitive skin/lips can react to flavors, especially strong flavors. ... Hope this helps.